The Slippery Slope
G has always been a lively, friendly, happy boy. From birth and probably before, he was always busy, moving, thinking, doing. He had an innate fearlessness, a need to climb, to take risks. By pushing the boundaries he actually soon learned his limits. There was never a dull moment with him. Before he could walk he managed to drag a chair to the back door and crawl off down the garden. I managed to locate him by following the self satisfied chuckles, which led me to the far end of them garden, to rescue him from the top of a step ladder. He’s a problem solver, and divergent thinker. If he couldn’t find his drink cup, no problem – he could always climb into the rabbit cage and drink water from the rabbits’ water bottle . Trips to the library were a bit of an adventure. As I tried to choose books with him, he would climb to the top shelf. He was the child other parents gasped “whose child is that?” as he was doing some death defying leap.
When he was 8 he was diagnosed with ADHD and the year after with dyslexia. He is very dyslexic. 0.5 percentile for writing dyslexic, with lots of intervention at his dyslexia friendly school. The Educational Psychologist reported that he had surprisingly high self esteem for a child with ADHD and dyslexia. He understood his struggles but also knew his strengths. He was a brilliant gymnast and loved Parkour and was great a maths and science. However she did warn that he was a vulnerable learner, and would need support with the transfer from primary to secondary school. She said she would be willing to work with him at that time. He had already developed his own coping strategies, which school were happy for him to use, as long as he wasn’t too distracting to the class. He found that he could concentrate on what the teacher was saying if he could do detailed sketches in a notebook whilst he listened.
His struggles with school began in the last year of primary. He couldn’t deal with the criticism and comments of not only teachers but other pupils in his class, particularly girls. No matter how many times we approached school, nothing changed, and he was looking forward to secondary school for a change from the very school village school that no longer seemed to suit him. He had started to fall asleep at his desk and say he was too ill to go to school. He was referred to a paediatrician by the GP.
The night before he started at High school he laid in bed, almost too excited to sleep, squealing and laughing with excitement. The SENCO seemed to understand what he needed having met with the primary SENCO, and met G. on numerous transition days. The head teacher had met with me to discuss G’s needs and explained that he believed that not all children can fit into school and that schools need to adapt to their needs. However, before the first week was over he had missed a day due a high temperature and swollen glands, then two days the next week. It was not long before the SENCO/Deputy Head rang me to express concern and to say that he needed to attend regularly, or they would be taking action to ensure his attendance. I explained that no matter what they did , if he was too ill to attend, he was too ill.
Then he started having major meltdowns at home, refusing to go to bed, to get up, to go to school. It was clear this was total distress, not merely behaviour. He would be destructive, and shout swear words repeated in a cycle, over and over. Horrible words that I had never heard him say before, some that I had rarely heard anyone ever say before. The SENCO kindly offered to share her expertise with getting high school children into school, and came over to collect him, and show me how to do it! He was dressed and ready, but as soon as she walked in he announced he was blind and proceeded to stagger around the kitchen bumping into things. She used her best teacher voice and said “ Come on G, lets go to school. Your Mum has things to do, and I haven’t got all day!” He then ran off down the garden and yelled “when that B….ch leaves I will come back in.” She was surprised. Apparently in all her years of teaching she had never gone back to school empty handed. She obviously hadn’t met a G before. When she left he said “Big mistake she made, I have got all day. I am not going there,” as his sight miraculously returned! It was a turning point for us with school though as the SENCO could see there was a genuine problem. She asked me how I manage to cope with him every morning, and stay so calm and positive. On days when I couldn’t get him in she would ring me in the evening to check I was alright. I really wasn’t alright though. I was worn out from his lack of sleep, and from watching him struggle, and from the complete shock and frustration of nothing I tried working.
Some days he would get ready for school, but would became more distressed the closer we got to school. He began to grab the steering wheel to prevent me from turning into school and tried to put the hand brake on as I was driving. Other days the SENCO managed to persuade him to get out of the car after 30 minutes of him kicking and screaming and trying to destroy my car. One day he looked back at me as he walked in with them, and I saw a look on his face, and realised I was a leaving him in a place that he genuinely couldn’t cope with. I met with head teacher and SENCO to agree some changes to the school timetable, a card for him to go to the library when he needed to get away from the classroom, promises to check all staff knew about his needs. It turned out some of the staff had been really unsympathetic to him. When he refused to go despite this, I was encouraged to bring him for any part of the day he wanted to go.
Every night we had the meltdowns, the swearing, the destruction and the total distress, which usually ended with him exhausted and very sorry, until one night.. When we finally got him to his bedroom, he began banging his head on the wall, shouting that he needed to just break his own neck and die. That led to GP referral to CAHMS. Another time he was on the roof of the house, jumping back and forth between the roof and the hay bales on the farm yard next to us. This resulted in a call for an ambulance and another urgent request for CAHMS to see him sooner rather than later. The SENCO suggested he was suffering from a sensory overload at school and we both desperately searched for information on line. Could this be PDA, ODD?
After attending a school pantomime trip with his friends, but then not going into school the next day I had a rather unpleasant phone call with the up until then supportive head teacher. “So, you think its alright for G to attend a pantomime and then not come into school? I had children who were not allowed to go because their attendance was too low, and I had children coming to me to ask why G was allowed to go when he doesn’t go to school every day.” I remember replying, “ What did you reply to them ? Did you tell them it was nothing to do with them? That they are children and you are in charge of what happens at school not them? Are the other children who weren’t allowed to attend also struggling like G? Why weren’t they allowed to go? Do you think I don’t want him to come to school or that he doesn’t want to ? He just can’t. Do you think we are enjoying this? It is affecting our whole family. Could you explain why when he arrived with me yesterday after having a panic attack in the car and he asked to go to the library, as per the agreement, to calm down, the receptionist wouldn’t let him and marched him into his classroom? What training and qualifications in SEN and adolescent mental health does the receptionist have? In fact, what qualification does the librarian have? And as you are a high school, with experience of transition, why are the year 7s mixing with the older children, and not gradually being introduced to high school? Where is your pastoral care team? “
Apparently the receptionist didn’t have any training in working with children and the one person he would go to when he was desperate was …a qualified librarian. There was no pastoral care team, and the SENCO was also a subject teacher and a deputy head was so rarely available. That was the point when the head uttered the words “Have you ever thought of moving to a different school? “ He recommended another school, with a year 7 unit and excellent pastoral care.
“ What a good idea! Why don’t I ring a school at the end of their first term, and ask if they would like my dyslexic with ADHD who doesn’t attend to transfer to their school!” But as silly as that sounded that was exactly what I did. That was around the time when I became familiar with the terms School Refusal and Demand Avoidance. I found a website and a Facebook group and that was a major step for me – other parents with lots of children, unable to attend school.
I can’t believe how slow I was to figure this out – that a very vulnerable dyslexic boy was leaving a class to go to the library to sit alone, when he couldn’t cope in the classroom. He expressed that he couldn’t cope with all of the different teachers and all the different children in all the different rooms . Some of those teachers made his struggles even worse. Some teachers would shout at him and other children were still being allowed to comment on his behaviour.
One apparently decided to be even stricter with him than other children, to nip his ADHD in the bud, without realising he is nervous about making mistakes, and is hard on himself when he does. He didn’t need a stream of criticism from teachers and other children about mistakes.
At parents evening, one teacher had even said that he needed to go to school every day in year 7 and not miss any lessons as he would need to get over his dyslexia as in year 8 he wouldn’t have support anymore! I reminded him that dyslexia doesn’t work like that and he will be entitled to support throughout school and into his working life if need be. He then said “you think you are really clever don’t you? Your primary school said you are good at science. But you aren’t. They might think you are level 5, but you are not, you are more like a level 3!! Who would say to an anxious ADHD school refuser who was late for school, “Nice of you to join us, perhaps you could explain to the class why you are late!” but thats what his science teacher did. He was a deputy head teacher!
By now his self esteem had hit an all time low. He has stopped going to gymnastics and to parkour, and most other things he used to enjoy. A community paediatrician nurse came over to talk with him, whilst he was on the waiting list for CAHMS . She explained to me that children often know when things aren’t right and we need to trust their instincts and support them. I told G that his school was not taking care of him, that he had tried so hard and I was proud of him for that. I finally understood what he hadn’t wanted to say, hadn’t known how to say and told him that we would look for a new school where they would take care of him. That was a major turning point for him.
The SENCO was disappointed, she said that she had been planning to refer him to the Ed Psych, apply for top up funding to meet his needs, and was going to buy him a note book so he could do his sketches in class to help with his fidgeting, the notebook she was told about before he even started at the school, the notebook he used as his main coping strategy. He’d been without it the whole term! It was too late by then.
School refusal has been a journey I wouldn’t wish on anyone. Our whole family have been affected. We felt helpless and sad to see his horrific battles. There were so many signs that he was desperate. I listened to a number of professionals and tried to follow their advice even though it was inconsistent, and really not effective and added to his distress, and I am so sorry. I am very proud of him. His school refusal was the only way left to say “I can’t do this, its not right for me.” And he was strong enough to say it. He said this me, and to the professionals and when we all should have been supporting him. Thank goodness he didn’t come to any more harm. To all those commenters, “ If he was my child I would make him go.” Really how would you do that? Would you force him at any cost? Would you risk being that parent who would find out too late just how desperate their child was? He wanted to go to school, but he couldn’t. He still can’t.